My Funny Valentine

It isn’t often that I find myself waxing poetic on the joys of Valentine’s Day, quite the reverse.  Though the candy-coated hype can be sickening, on the whole, I am indifferent to its dubious charms.  As I wrote earlier this year in response to a blog comment championing the holiday:

 I don't place that much importance on it. I'd much rather have a relationship where you surprise and appreciate one another throughout the year than have a humdrum relationship with an ostentatious show on the days you're "supposed to" be romantic.  

This year was different.  

I didn’t have high expectations.  I never do for Valentine’s day – I’ve been disappointed far too many times.   I did have a boyfriend, but that didn’t matter – my worst Valentine’s days have been the ones I’ve been in relationships.  The previous night P and had had a long discussion about the dreadful holiday.  It was the same for her, but a thousand times worse – the poor girl had been with someone for years and never gotten a single flower!  Some of the horror stories she told made me want to swear off Valentine’s altogether.

But this year participation was mandatory, I already had plans.  J was picking me up at 5.  Whatever.  Just another Saturday, I tried to tell myself.  I went for a run, talked to a few of my depressed girl friends, and just went about my day.

Around 3 my phone beeped at me, “Did you get anything from me this morning?” said J’s text message.

The building's super, Castro, wasn’t holding a package for me, no notes on the door … nope, no package.

I shrugged my shoulders and got ready.  A few hours later J picked me up at 5 carrying 2 dozen deep pink roses. “They are beautiful!”   I exclaimed, after a moment.  

“They aren’t as nice as what I was supposed to come,” he said as he opened the car door for me.   “I bought you a miniature rose bush in a beautiful pot I picked out especially for you.  Long stem roses only last a few weeks, but you can keep the rose bush forever.”

When we got to his apartment, he cut off the bottoms of the stems and crammed them into an elegant vase, clearly designed to hold a dozen roses.  Flowers squished firmly into the vase, like little pink anchovies in a sea of green, he reached into a bag on the nearby countertop.   Extracting a small glass bottle he presented me with a present – rose salt he’d gotten in Georgia.  “I saw it and thought of you.” he told me.  I thanked him and looked at the curious gift.  It was nice that he’d thought of me on his holiday, I do like salt, and rose salt for Valentine’s day was a really sweet and thoughtful present, but I was still skeptical.  Having over an hour before our dinner reservation, so he fixed us each a drink and we adjourned to the sofa to talk. 

The only time we’d hung out in a month was for his father’s birthday celebration – I was concerned.  Sure he’d been out of town for part of the time, but he’d had time to hang out with friends.  We never saw each other - this wasn't how it was supposed to be, was it?  I had been thinking about it for weeks.   He didn't want to see me - I just knew it.  What had I done wrong this time? 

Even when he gave me the roses J had seemed stiff, like he was doing it because he was supposed to – like he couldn’t break up with me on Valentine’s day but he was only there because he felt obligated.  Had another relationship somehow self-destructed without my knowledge?  I took a deep breath and steeled myself for the worst.  If he wanted out that was fine, I just didn’t want to drag things out if he didn’t even want to be around me.

Somehow it didn’t work out like that.  In the midst of my paralyzing fear, when we actually sat down on the sofa, and he put his arms around me, the tension started to slip away.   We talked – about everything; my fears, and problems, his concerns, obligations, our relationship, and how we would make things better in the future.   With anyone else it would probably have been a nightmare, but it just seemed to strengthen the relationship.  It felt so nice – like I could tell him anything.  We talked for over an hour.  By the time we had to leave for our dinner reservation, all my fears allayed, I was happier than I could remember being with a relationship.

As I have mentioned in earlier entries, as for many brain injury survivors, developing and maintaining romantic relationships is far from being one of my strengths.  Understanding and living with brain injury can be difficult in and of itself, but adding the heightened emotions of relationship to the mix and you have a recipe for volatile behavior.  Add to that the additional fatigue from heightened emotions, more fatigue from learning social behaviors, fear from past bad experiences, and so on and so forth.  Relationships can be terribly hard.

I think that the most important qualities for a survivor’s partner are patience, compassion, and strength.  For survivors, I believe that openness, perseverance, and an earnest desire to work at the relationship are integral.  Survivors can make wonderful partners, one may have to put in a little extra effort, but it will be repaid tenfold. 

I feel extremely lucky to be with someone who is patient with me and does put the effort out.  I can only hope that the friendship and relationship continue to develop and that our friendship and partnership grows stronger over time.   There are patient, caring, loving people out there.  It is just as important for this as for all other aspects of improvement - never give up hope.  There is even an online support community for people with disabilities and their partners.   http://www.able2beme.com/ 

Strengthen Your Body, Strengthen Your Mind

It was 60 outside.  It had been gorgeous outside for days.  At another time, or in another place I would have embraced these balmy weather.  But spring hadn’t arrived – this was New York, it was the middle of February.  It would last just long enough for me to let my guard down.  That way the bitter cold would be twice as bad.  Global warming?  More like Global weather mood disorder. 

By Friday I was starting to second-guess myself – maybe spring had come early.  If that’s the case then I need start getting back in shape.  With the apartment too hot to work out in, and the weather too cold to run in, I hadn’t worked out all winter, and I was starting to feel like a disgusting lump.  Yeah, now’s as good as time as any.  I resolved to start the next morning with my first run of the season.  

The alarm went off too early for a Saturday.  Maybe I could sleep for a while longer … maybe…..

 

 No.  No, you’re not going to be lazy today, I told myself.  It’s time to get up. Taking a deep breath, I lurched up out of bed.  Pushing away, I scrambled to get ready before the inviting bed lured me back.  Pulling my hair unceremoniously into a ponytail, I climbed into some work out clothes, and shoved on my running shoes as quickly as I could.  

Focused on getting out the door before the last remnants of that initial momentum dissipated, I barely remembered to grab my hoodie and ipod (metrocard inside) before dashing out the door.

Pleased I’d made it out of the apartment, I energetically jogged into the brisk morning air.  Half a block later I zipped up the hoodie, another block and my hands found their way deep into my 

pockets.  Breath visible, I fervently wished I’d brought gloves.  Google had said it was getting up to 50s!  Didn’t I just see ice 

there on the sidewalk?  Stubbornly I ran on despite the weather.  Surely I could make it to jog a little in Riverside Park.  2 miles -I could run that in my sleep.  I wasn’t in good enough shape to make it all the way back – I’d just take the subway at the Columbia stop at 116th street.

A mile and a half later, my breath started to come harshly, soon daggers pierced my lungs.  Blocks later my stomach started to cramp.  “Just to the end of the bridge, just to the end of the bridge,” I chanted the words like a mantra. 

I made it – barely – and jerked to an abrupt halt.  I couldn’t have made it a step further.  Hands on my knees, stomach threatening to unburden itself of my nonexistent breakfast, I sat down on some nearby stone steps.  A moment later, when my stomach had calmed down, I dragged

 myself to the nearest subway and shamefacedly gasped and wheezed my way home. 

Unbelievable how out of shape I’d gotten in just a few months.  I was a wreck!  It was ages before my lungs stopped feeling like someone had turned them wrong-side out.   Finally when I felt a little less like a puddle of gelatinous goo, I took a long hot shower, stretched, and fixed

 myself a nice hot cup of earl grey. 

Sipping my tea I told myself (for the thousandth time) I would work out on a regular basis year round.  I'd be sore tomorrow.

I need to work out.  It isn’t just so I can fit into my jeans, looking nice is important, and a motivator, but it's not the reason.

  My physical health is important, but it’s not just that either.  For myself and other brain injury survivors, working out is imperative for cognitive and mental health, as well as physical well being.

For brain injury survivors, exercise has been shown to:

v   Increase neuroplasticity (helping the brain repair and learn)

v   Increase proteins involved with learning and memory

v   Reduce depression (in more pronounced ways than for those without brain injuries

v   Reduce the number of physical, emotional and cognitive complaints and symptoms (including sleep disorders, agitation, organizational skills, and so forth)

v   Improve memory

v   Improve speed and thought processes

When I began writing this entry, I realized that exercise was good for recovery but I was surprised to learn the extent to which it can help.  We have every reason in the world to exercise.  Now there's no excuse.  Let’s strengthen our bodies to strengthen our minds.

 Onwards and upwards, let's move forward with our improvements….

 

http://query.nytimes.com/gst/fullpage.html?res=9C04E2DE1130F936A35752C1A961958260

http://www.ncbi.nlm.nih.gov/pubmed/15051152

http://cat.inist.fr/?aModele=afficheN&cpsidt=1785254

issue#2 http://www.mssm.edu/tbicentral/resources/publications/tbi_consumer_reports.shtmlhttp://www.colemaninstitute.org/Conferences/Coleman-2002/Boulder-material/posters/Kreber.pdf

Brain Injury Awareness Month - Faces of Brain Injury

Did you know March is TBI Awareness Month?  

If you already knew then you're one step ahead of me - I didn't have a clue until last week when my contact at the Northeast Center asked me if I had seen their Brain Injury Awareness site.

http://brain-aware.northeastcenter.com/

The Northeast Center takes their 2009, "Faces of Brain Injury," theme very seriously.  Through 12 downloadable Brain Injury Awareness Month Posters, they seek to humanize this condition and show that the faces of injury are as varied as the injuries themselves.  Brain Injury awareness not only celebrates survivors, but also spouses, parents, siblings, doctors, therapists, advocates, and every member of this diverse group of individuals from an array of other backgrounds making this community.

Put a poster up in your office or at school, let a friend know a little more about how you are related to TBI,  talk to someone you meet this month.  It doesn't have to be a big deal, but if all of the members of this community work just a little harder to help put a face to brain injury, then think what we can do towards raising awareness.  This month, let's make strides towards making the invisible injury visible...

Hindsight is 20/20

“I wonder why you sometimes don't do what you know would help-you've given us several examples: not crying on J's shoulder, not getting enough sleep, not eating enough.”

Often outsiders wonder precisely this about brain injury survivors' actions as this insightful blog reader.  So many problems could just be avoided if survivors would simply listen to what doctors’ advice.  In my case it’s even stranger – I know the right thing to do – why don’t I just take my own advice? 

To ease your mind dear reader, though I do struggle with TBI, and the deficits remain, at this point they are shadows of their former intensity.  For the purposes of this blog however, I am focusing on this aspect of my life to better illustrate these entries in order to help educate, inspire, and offer guidance.  However, because of this I give examples of what I am doing wrong, and point out how to do it right in hopes others can learn from my mistakes.  Even though it may sound like my life is a constant battle, I simply don’t write about the good days because they aren’t informative, interesting, and don’t have much to do with brain injury.  In other words, though I had a delightful Valentine’s day with J, writing about the beautiful roses he gave me, our phenomenal dinner, or any other part of the perfect evening, simply did not seem pertinent.  However had this been the sole reason I would not have found it necessary to devote an entire blog entry in response to this comment.…

The other, more complex reason, is a hallmark characteristic of brain injury - poor judgment. Distracted by excitement, caught up in the moment, or locked in a single-minded “need” to get things done, one can push through, oblivious to the warning signs.  To make things worse, the more fatigued, agitated, or focused a survivor becomes, the harder it is to step back and listen to what your body is telling you until it is too late….

My stubborn nature and drive to always push myself further, beat the odds, and prove my self-sufficiency has served me well in many ways.  I believe it has given me the strength to come as far as I have, and has made me who I am today.  However, there is a time to push forward, and there is a time to listen to what your body is telling you. 

Unfortunately I have not yet mastered the art of recognizing when to say when.  I can and do overextend myself, refuse support (not wanting to be a burden), stay out too late, and generally ignore what my body is telling me.  Curiously, the more I take on, the more energized and invincible I feel.  When I get to this euphoric state and push past the brief “nap threshold,” as I refer to the point when exhaustion washes in, whether it is an emotional meltdown, a TBI episode, or me just getting sick, the outcome is never good.  

After the fact I realize exactly what I should have done, and generally kick myself for it. “Hindsight is 20/20” could practically be my slogan.  However, in the heat of the moment on the other hand, stopping isn’t even an option, and unfortunately, a common problem.

Fortunately it is not an insurmountable one.  Brain injury is a desperately lonely thing. This is, however, a time where you need your friends, family, and support the most. It is extremely important to be open with your family and friends about challenges you face.  An outsider’s perspective and a little common sense go a long way in diffusing the situation before it goes too far. 

It isn’t difficult, all it takes are a few gentle prompting words to guide the survivor towards thinking about the consequences of their actions.  This may take the form of suggesting a nap, recommending you cut down your course load (or not taking on so much) in order to do better at a few things (and giving some examples of what could potentially happen), reminding the survivor they have to get an early start.  This is merely another way suggestibility can be used to guide survivors towards wiser decisions.   So many crises truly are avoidable if the situations are correctly handled.  Calmer days are just around the corner….

No Problems Come Without Gifts

There are links between brain injury and depression.

This statement seems painfully obvious.  Of course there are links between brain injury and depression.   It is one of the most widespread challenges facing brain injury survivors.  Up to 77% of survivors are intimately acquainted with the crushing despair, the feeling all happiness has been sucked from the world as their lackluster days drag on endlessly.   Is it any wonder?

Brain injury capriciously robs survivors of intellect, social skills, physical abilities, and so much more, haphazardly taking a bit of this, a bit of that.  Every ‘given’ is thrown into question, always and forever loses all meaning.  Lifelong relationships crumble, your emotions are no longer your own – you’re not you anymore.  Every survivor I’ve ever met has struggled with depression.  We're mourning the loss of ourselves - how could we not?  

There are links between brain injury and depression – tell me something I don't know already!  

Brain injury can cure depression.

I did a double take when I read it, but it's true.  Studying Vietnam vets and other TBI survivors, Neuroscientist Michael Koenigs and his colleagues have discovered that when the part of the brain right behind the eyes (the ventromedial prefrontal cortex – VMPC) is damaged or destroyed it actually “cures” depression! 

In one extreme example mentioned in the study discusses a woman who had cured herself with a gunshot to the head.   Through some miracle, her attempt at suicide not only failed, but also managed to neatly destroy her VMPC, after which all depression vanished.  According to her neropsychologist, “she never shows distress, worry, or anger.”

At first glance this blissful state of perpetual calm,  sounds quite nice.  After all, brain injury damaged a part of my brain proven to cause depression, I must admit, I felt a bit like I’d gotten the short end of the brain injury stick.  Until I read the fine print….

That’s right, there’s always a hidden cost.  Don’t go signing yourself up for a 1950s-style lobotomy too quickly.  Though taking out the VMPC does help depression, there are serious social and cognitive deficits.  Survivors frequently will lack empathy, compassion can’t interpret nonverbal cues, see connections, and the list just keeps going.

This is not to say that one type of injury is better or worse than another - all deficits are hard – brain injury is not for the weak of heart.  Over the years I have become accustomed to, learned to regulate, and even come to see some positives in these challenges.  Trade mine for a new set?  No thanks. 

Heightened emotions may have their drawbacks, and I am sure there are those who would be happy to waive empathy and insight goodbye along with depression, but not me.  I was, thankfully able to balance my brain chemistry out, and bid the days of clinical depression farewell years ago.  Though I have moments I am grateful that I’m able to experience the entire range of human emotions – the joy wouldn’t be so sweet if I didn’t know the salty taste of tears…

It is true, everything comes at a cost, but no problem comes without bearing gifts.  It is our duty to uncover them….

The Links Between Brain Injury and Depression http://insciences.org/article.php?article_id=2359

Neuroskeptic: No Ventral Prefrontal Cortex? No Problem! http://neuroskeptic.blogspot.com/2008/12/no-ventral-prefrontal-cortex-no-problem.html

Traumatic Brain Injury and Depression http://74.125.47.132/search?q=cache:n04aY9dA_28J:www.freddhaas.com/CM/Articles/

Deficits in Social Knowledge Following Damage to Ventromedical Prefrontal Cortex http://neuro.psychiatryonline.org/cgi/content/full/17/1/66

CNS Spectrums: Depression, Anhedonia, and Psychomotor Symptoms:  The Role of Dopaminergic Neurcircuitry

http://www.cnsspectrums.com/aspx/ArticleDetail.aspx?ArticleID=1613

One Step at a time … Improvement vs. Recovery

Further recovery is always possible for brain injury survivors.  With perseverance, determination, and above all hope miracles are possible.

I didn’t always think like that.  When doctors first told me “recovery is a life long process,” I wanted to cry.  It seemed as if they were saying that I would have to fight tooth and nail struggle every day working reclaim what I had lost – to put together the pieces of the ‘me’ that was.  With depleted energy, while regulating the apparently insurmountable cognitive and social deficits and living my life.

Even with their warning, I clung tenaciously to the idea that one day I’d get over it and be ‘normal’ again.  Much to my dismay, each time I felt good about my life and started pushing myself as I had before the accident, I’d end up fatigued or worse, reach the point of a meltdown.  When this happened, it felt to me as if I had taken ten steps back. I just wanted to be better.  I just wanted it all to be over.  I just wanted to be cured.

Over time, I came to realize how unrealistic both the fear of having to juggle everything at once and my expectations truly were. 

The doctors were right; recovery is a lifelong process.  Complete recovery is impossible.  One can never regain all that has been lost.  There is no cure.  Improvement, however, is within reach.   One may even gain skills and reach heights unattainable without having first gone through this trial.  Moshe Feldenkrais said it best in his book Body Awareness as Healing Therapy: The Case of Nora:

“‘Improvement’ is a gradual bettering which has no limit.  ‘Cure’ is a return to the previously enjoyed state of activity which need not have been excellent or even good.”

As they say, God never closes a door without opening a window.  Every challenge comes with gifts, though they may be extremely hard to see it is important to try.  I would be lying if I said I did not mourn all that I have lost, or am to any degree grateful for the Accident.  However, I do believe that having to struggle with my deficits has done a great deal towards making me a more compassionate, patient, perseverant, and goal-oriented individual.

I realize that I am extremely fortunate in having come this far, but I believe it is a universal truth that no matter where you are, there is always room for growth.  That is what we are truly working towards – not recovery, improvement.  To work towards recovering a past one has no hope of fully recovering seems a dismal prospect.  Working towards improvement, on the other hand, offers hope and opens a world of possibilities.

Set small goals.  Take everything one day at a time, put one foot in front of the other – it all will come together. At times the progress can be imperceptibly gradual, but we are always building new pathways.  Getting impatient and try and tackle everything at once (like I did) will make recovery seem like an insurmountable challenge.  Have patience, and every so often take a glance back, seeing how far you have come will amaze you….